Boxer 9 just diagnosed with Cushings (Ben, trilostane treatment)

[Boxer_lover]

Hi my name is Wendy and I am the proud owner of 3 Boxers!! Ben is almost 9, Elliott is 16 months and Olivia is 4 months.

Ben just got diagnosed with Cushing's this week and I am crushed. His ACTH stimulation test yielded a result of 20.2 ug/DL.

His symtoms started about 8 months ago when I noticed him panting more and more. Just this past two months his water consumption has gone through the roof and just in the last couple weeks I have noticed the appearance of the "pot belly".

I had blood work done and the only abnormality was high liver enzymes. The test was repeated a couple months later with the same results. He just had the ACTH test this past weekend.

He is having the test to determine the type of Cushing's (adrenal or pituitary) next week. In the meantime, the doctor has recommended starting him on 180mg of trilostane per day. Due to his size (107 lbs) the cost is through the roof. Of course I would do anything for my kids, but it will be a struggle.

I appricate and feedback and thank you for all the wonderful information that is available here!

Thanks!
Wendy
(Ben, Elliott and Olivia's mom)

[frijole]

Hi Wendy! Welcome and glad you found us. We have all been down this path and so we understand where you are right now. First off, know that cushings is not a death sentence. My dog is over 16 now and has had it since she was 12 1/2. She uses lysodren.

Back to your baby... that acth is borderline cushings in my opinion. I guess labs may vary but I would not give any meds yet. I am glad your vet is doing the LDDS test that would signify which, if any, type of cushings is involved. Did you say your vet wanted to start trilo BEFORE the results? I personally would not. Reason being the acth results are low and there are other illnesses such as diabetes and hypothyroidism that mimic cushings. Cushings isn't easy to dx and is very often misdiagnosed.

If the LDDS test comes back negative for cushings then you will have to do additional testing. Did the vet do a thyroid panel? Was diabetes ruled out?

Do you have the blood panel results on you? Eventually you will want to create a folder and put copies of test results in it so you can track over time what has happened. It comes in very handy.... at least with my memory. ;)

So for right now I think it is best to focus on getting the 8 hr test done and wait for the results. If it is adrenal cushings surgery might be an option. Also we see more vets using lysodren with adrenal cushings than trilostane. So - yet another reason to hold off.

Did you have a sonogram done? The more info you share with us the better able we are to help. Again, welcome. You aren't alone on this journey!!! Kim

[Boxer_lover]

Thanks Kim. Yes diabetes was ruled out as well as thyroid issues. The ACTH test was sort of the last test we did to figure out what is happening with him. I do not have the blood results on me, but I will ask for them the next time I talk to my vet. He has not had a sonogram, but early on he did have an abdominal xray to rule out any obvious cancers (at my insistance I might add!).

I will hold off on the meds as you suggest, but I am axious to abate his symptoms. He just seems so uncomfortable (poor guy!)

My vet has said the ldds test sometimes gives false positives for Cushing's. So is this a reliable test? I have read so much info in the last few days that my head is spinning, but it seems to me that he has most of the classic symtoms.

Thanks for you reply and I look forward to hearing from you again.

Wendy

[frijole]

Wendy, the ldds test is valuable and it can dx cushings, sometimes it can distinguish adrenal vs pituitary, sometimes it is inconclusive. There is another type of cushings that some vets aren't aware of called atypical cushings. LDDS will not dx it. Additional tests would be required.

You are off to a fantastic start by reading. You are Ben's voice in this and it will be very helpful to you if you know enough to understand what the vet is saying, to question him/her. I do not know how experienced your vet is or if you have a specialist involved.... I just know I had to fire my original vet because she said she was experienced but she wasn't.

It sounds like your vet is doing the right testing. My only concern if I understood correctly would be suggesting you start the trilo prior to confirming the dx. That low score on the acth would not be enough in my opinion to start it. You want to do the ldds test prior to treating. If it is adrenal cushings you might consider surgery which could cure it or lysodren which seems to do a better job with adrenal cushings.

So for now, I'm linking you to our reference section. Start with the easy stuff!!! Ask us questions. Then read up on the testing (acth and ldds tests) Worry about drugs last. Ask us more questions. :D You get the drift.

You are not alone on the journey. We have been there and are here to help you and Ben. Best of luck! Kim

http://www.k9cushings.com/forum/forumdisplay.php?f=10

[frijole]

I forgot! Could you get the results from the blood panel and post the abnormal results? Post the numbers as well as the range for normal since labs vary. This would be helpful. Thanks!! Kim

[mytil]

Hi Wendy,

Welcome from me too.

I just wanted to agree with Kim here. Here is another link for you discussing the diagnostic and treatments. And I would also discuss these further with your vet. http://www.k9cushings.com/forum/showthread.php?t=210.

Keep us posted
Terry

[Boxer_lover]

Ok I just got Ben's blood work info. Here are the items that are listed as abnormal:

On 1/2/10:
ALKP 462 g/dl (23-212)
ALT 184 U/L (10-100)

11/27/09:
MPV 10.400 fl (6.10-10.10)
ALKP 484 U/L (23-212)
ALT 234 U/L (10-100)
AMYL 2253 U/L (500-1500)
Sodium 163 mmol/L (145-159)

3/6/10
ACTH pre cortisol level 4.30 ug/dl (1-4.5)
ACTH Post cortosol level 20.20 ug/dl (5.50-20)

I hope this provides more info for you! Thanks for your input!

Wendy

[lulusmom]

Hi Wendy and welcome from me too.

Please see my comments below in blue:


Thanks Kim. Yes diabetes was ruled out as well as thyroid issues. The ACTH test was sort of the last test we did to figure out what is happening with him. I do not have the blood results on me, but I will ask for them the next time I talk to my vet. He has not had a sonogram, but early on he did have an abdominal xray to rule out any obvious cancers (at my insistance I might add!).

I will hold off on the meds as you suggest, but I am axious to abate his symptoms. He just seems so uncomfortable (poor guy!)

Good for you. As others have mentioned, the results of the acth stim test is borderline and while Ben's symptoms are consistent with cushing's your vet has done inadequate testing to reach a confirmed diagnosis.

My vet has said the ldds test sometimes gives false positives for Cushing's. So is this a reliable test?

The LDDS is an excellent test and sometimes it can actually tell you which form of cushing's a dog has; however, your vet is correct in that it is more likely than the acth stim test to yield a false positive result if a dog has a non adrenal illness or is extremely stressed out.

I have read so much info in the last few days that my head is spinning, but it seems to me that he has most of the classic symtoms.

Spinning head syndrome is the norm for people that just got the diagnosis and are trying to wrap their heads around cushing's. It's not gonna happen for you overnight, in the next week and probably not in the next month but the light bulb will eventually go on. When that happens, you will be as cool as a cucumber, confident in your role as Ben's excellent advocate and you'll be able to carry on meaningful discussions with your vet.....and if you are really confident in your understanding of the disease and it's treatments, you can aspire to become just like me and be a total thorn in your vet's side. :D:D:D Actually, most vets appreciate the fact that a pet owner has taken the time to educate themselves about whatever is going on with their dog or cat.

Classic symptoms associated with cushing's are also classic symptoms of other conditions and because the diagnostic tests for cushing's suck when it comes to a vet being able to rely on them for an accurate diagnosis, the need for additional testing is not an option but a necessity. Since the acth stimulation test result should be interpreted as borderline, in my opinion, I certainly wouldn't start treatment without further testing. If there is any good news for cushdogs, it's the fact that unless they've had the disease for a very long time and are debilitated by the muscle wasting or their immune system has become severely compromised, they aren't really in any pain. Studies have shown that most dogs that are diagnosed have had the disease anywhere from one to six years so it really is a very graded, slow progressing, disease. Honestly, you have lots of time to make sure that Ben is properly diagnosed.

In my opinion, an abdominal ultrasound is worth the bucks because the vet can take a good look at the adrenals for evidence of hyperadrenal activity as well as take a look-see at the surrounding internal organs. Most dogs with cushing's will have enlargement of one or both adrenal glands and an enlarged liver so this would validate a cushing's diagnosis and will usually show which form of cushing's (adrenal or pituitary) is involved.

I have two cushingoid dogs and my first one had every screening and diagnostic test for cushing's known to man before starting treatment so I know how expensive the diagnostic phase can be. The good news is that the expense goes down immensely after you stabilize a dog on treatment.

Speaking of screening tests, did your vet do a urinalysis? This is routine in making a cushing's diagnosis as a cushdog that is drinking and peeing buckets will have dilute urine with a low specific gravity. Please go through your records and post the results of any urinalysis that was done.

Sorry if your head is spinning worse that before but I think somebody already warned you that we do tend to ask lots of questions and I promise you that there is a method to our madness.

Thanks for you reply and I look forward to hearing from you again.

Wendy

[lulusmom]

Hi again,

I forgot to mention that there are entities that can help with finances. Having two cushdogs, I don't know what I would have done without Care Credit. Here's a link that might come in handy for you.

http://www.k9cushings.com/forum/showthread.php?t=212&highlight=financial

Also, I forgot to ask if Ben is neutered.

[Boxer_lover]

Thanks so much for the info! Yes, Ben is neutered. I do not see where a urinalysis was done. I will ask for one to be done when he has his LDDS test is done, if possible.

Thanks again!!

Wendy
Ben's best friend.

[ChristyA]

Hi Wendy,
I just wanted to welcome you and let you know you are in great hands here. If you are ever unsure of anything, even what the vet tells you don't be afraid to ask. How many dogs with cushing's has your vet dealt with? If not many you always have the option to ask to be referred to an IMS.

I see you were advised to keep a file on Ben. I've done that. I recorded every oz of water Dexter drank when he started his medication, how much food he ate, even what his stools were like :eek:. This will be very helpful to you in the future. Also make sure you have copies of all tests that were done.

I'm glad you are here since Ben has cushing's. Oh and by the way,,you really need to know whether it is adrenal or pituitary for sure not just a probably. We used lysodren.

Ben is a beauty!:D
Christy

[Boxer_lover]

Thanks Christy! I have started a file for Ben with all his test results. I do plan to ask my vet how familiar she is with Cushing's. I am not sure there is a specialist in my area so I may have to take him to Indianapolis. No worries though as I would do anything for him.

I see you are a fan of Boxer's as well. I saw a quote recently. "Boxers are like potato chips, you can't have just one!" I guess that is why I have three!!!

Wendy

[lulusmom]

"Boxers are like potato chips, you can't have just one!" I guess that is why I have three!!!

I wonder if cushdogs are like potato chips and that's why I have two?? Nah, I don't think so. :D:D:D

[Boxer_lover]

Oh no! I hope not. Just found out my youngest has puppy mange. I have the worst luck!!!!

[Boxer_lover]

Just asked the vet and yes, a urinalysis was done and it was diluted. I guess this is also a sign of cushings?

[frijole]

I do plan to ask my vet how familiar she is with Cushing's.
Wendy

Hi Wendy! I had to do this also. My original vet said she was very experienced and "couldn't name" the number of dogs she was treating. :p But when I started asking about how she came up with the lysodren dosing plan (which was bizarre and not at all what was recommended) she said it came from a specialist. I asked who this was (there are no IMS in our entire state) and she said the lab. Labs don't work this way so I knew I had caught her.... So ask her how many dogs she is currently treating for cushings, which drugs, adrenal vs pituitary, etc and you'll quickly get a feel for experience level. ;)

I am worried that my 2nd dog has cushings or atypical cushings as well... it never ends. But we love them so. :) Kim

[frijole]

Just asked the vet and yes, a urinalysis was done and it was diluted. I guess this is also a sign of cushings?

If it is diluted is means it COULD BE. Most untreated Cushing's dogs do have dilute urine. Cheapest way to rule out cushings is with urine cortisol:creatinine ratio testing (UC:CR). If the UC:CR is positive, it could be Cushing's (and further testing is needed to be sure), but if it's negative, it pretty much rules out Cushing's. You do this test first and if cushings is ruled out you save the $ for the acth, ldds or which was done next.

[Boxer_lover]

I forgot! Could you get the results from the blood panel and post the abnormal results? Post the numbers as well as the range for normal since labs vary. This would be helpful. Thanks!! Kim

I posted the blood work, but no one has commented. I was just curious if you see anything that stands out? :confused:

Thanks,

Wendy

[frijole]

Thanks for asking. I am copying for others to see if they care to comment. Results:

On 1/2/10:
ALKP 462 g/dl (23-212)
ALT 184 U/L (10-100)

11/27/09:
MPV 10.400 fl (6.10-10.10)
ALKP 484 U/L (23-212)
ALT 234 U/L (10-100)
AMYL 2253 U/L (500-1500)
Sodium 163 mmol/L (145-159)

3/6/10
ACTH pre cortisol level 4.30 ug/dl (1-4.5)
ACTH Post cortosol level 20.20 ug/dl (5.50-20)



The ALK Phos and ALT levels (liver enzymes) are elevated as we see in cush dogs. Note they aren't all that high. (My dog hit 2000+) The cortisol level on the acth test is as you said. Again - it isn't real high.

The ACTH shows 20.2 where 20 is normal. I still am not convinced you are dealing with cushings. I could be wrong but I would do the LDDS prior to giving medication to be safe. It could also be that you have an "atypical cushings" dog.

Deb is our in house blood panel expert (shes a med tech) but the AMYL caught my attention. I've linked a site that talks about what it means and I am wondering if you aren't dealing with pancreatitus and not cushings. Perhaps that is what has elevated the liver enzymes? Have you noticed any bouts of vomiting? Digestive issues?

http://74.125.155.132/search?q=cache:pDu1VEb-iDEJ:www.bichonfriseusa.com/caninebloodwork.htm+blood+panel+dog+AMYL&cd=1&hl=en&ct=clnk&gl=us

[Boxer_lover]

No, he has not had any digestive issues (thank goodness!). I have LDDS test schedule for Thursday and I anxious to get the results.

I would tend to be skeptical about the Cushing's diagnosis if he were not showing most of the common symptoms.

I think, depending on the results of the LDDS test I will ask for a urine cortisol:creatinine ratio test. Do you think that is a good idea?

I was at the vet with my youngest today (diaganosed with puppy mange) and she said I looked visable tired and stressed. I told her I have been doing so much research that I am exhausted. You know you spend too much time at the vet when they comment on your well being!!

Thanks for you comments and I hope to hear from Deb regarding the blood panel.

Wendy

[Boxer_lover]

Oh one more thing. With atypical Cushings are the same symptoms present?

[Harley PoMMom]

With Atypical Cushings, a pup can and usually does show the exact same symptoms as Conventional Cushings.

Re; the elevated amylase, was Ben's "Lipase" also on this lab report?

Usually the UC:CR is done as the first diagnostic test to "rule out" cushings.

Hope this helps.

Love and hugs,
Lori

[O'Riley]

I'm confused about the UC:CR test. For those of us trying to figure out if it's diabetes, cushing's, pancreatitis or all of the above, would the UC:CR definitely rule out Cushing's??

[Harley PoMMom]

The one thing the UC:CR test can do is rule out cushings if a dog has no other non-adrenal issues that would make the cortisol elevated at the time of the test.

[Boxer_lover]

Lori,

I do not see Lipase on his lab report. Does it have an abbreviation?

[Harley PoMMom]

Let me try to explain it better :p If one has a pup tested by the UC:CR test and it comes back negative...then the pup does not have cushings.

[Harley PoMMom]

Lori,

I do not see Lipase on his lab report. Does it have an abbreviation?

Usually when amylase is done, lipase is done too...hmmm. abbreviations...LIP, Lip, on Harley's lab report it is typed out.

[Boxer_lover]

Then I guess it is not on there.:(

I am starting to wonder in what order i should have all these tests done. Should I postpone the LDDS test and have other tests done first?

I feel the head spinning syndrome coming back. The vet even commented today that I looked very tired and stressed....you think?? :rolleyes:

[frijole]

:D We totally get where your head is at on this... and often debate which test is best to do first, then which etc. It depends on symptoms, other test results etc.

Your dog is so borderline on the acth that I would be inclined to do the UC:CR since it is quick and less expensive. It could eliminate traditional cushings. Then you'd be looking at what else is causing the liver enzymes to be high - perhaps atypical, diabetes or hypothyroidism. (I think you said diabetes was rules out but there is another form called diabetes insipidus... don't shoot me)

If your vet already tested the thryoid - find out which test was done because not all are as thorough/reliable.

If the UC:CR indicates it could be cushings, then you could have the ldds done. I am sure others will post opinions ... I wish there was an obvious "right way".

And if your head is about to burst from all this knowledge... take a break for a bit. I can remember being the same way. You don't have to learn it all in a week. ha. Hang in there! Kim

[Harley PoMMom]

If you choose to do the UC:CR test: This post comes from Dr. David Bruyette who is a nationally known veterinary endocrinologist and the medical director of VCA West Los Angeles Animal Hospital and a member here at the forum.



Yes. The same would apply when looking at urine cortisols in the initial diagnosis of Cushings. Ideally 3 morning pooled urine samples collected by the owner at home and refrigerated.

Dave

Love and hugs,
Lori

[StarDeb55]

I don't see where anyway has explained that the UCCR will only rule out regular Cushing's where you have an elevated cortisol level. If you are dealing with Atypical Cushing's where other associated hormones may be elevated, but the cortisol is within normal range, the UCCR will normally be negative in this situation. The symptoms of Atypical Cushing's will usually mimic PDH or ADH.

Debbie

[Boxer_lover]

Poor Ben has had a rough 24 hours. Yesterday evening he had his first accident inside. This is completely out of character for him. He was up several times during the night. He would just come over to my bed, sit down and pant. I would take him out and he would pee buckets. Right now he is panting really badly and seems so uncomfortable. I feel so helpless!

[labblab]

Hello to you and Ben!

I apologize for not posting earlier to welcome you, but I have just now been catching up on your thread. Just to throw out my few cents' worth :o... Since you already have the LDDS scheduled for Thursday, I believe I would go forward with it. As Glynda has said, your vet is correct that it is more likely than the ACTH to give a "false positive" in a dog who is suffering from another, nonadrenal illness. But given Ben's classic Cushing's symptomology -- if you also end up with a positive LDDS in addition to your borderline ACTH, I'd then say "if it walks and quacks like a duck, it probably IS a duck!"

The LDDS has two additional pluses. Dogs with the adrenal form of the disease are more likely to be positive on the LDDS than on the ACTH (the ACTH more often misses diagnosing dogs with adrenal Cushing's by returning a negative or borderline result even though they have an adrenal tumor). Plus, if a positive result is obtained on the LDDS, the pattern of the results can sometimes differentiate between the pituitary and adrenal forms of the disease.

You can certainly also easily perform the UC:CR. But given the results of the ACTH and Ben's symptoms, I'm thinking you are beyond the point where a negative UC:CR would rule out further testing. Given his elevated ACTH, even if his UC:CR came back negative, I'd still want to perform more sophisticated Cushing's diagnostics.

So if it was me, I'd try to just clear my head for a couple of days and wait and see what the LDDS indicates. Then depending upon those results, you can decide what the next step will be. One other thing -- I totally agree with everybody who has told you to hold off on the trilostane until the testing is completed. If nothing else, I would think that the trilostane treatment would skew the results of the LDDS and render it less accurate as a diagnostic test.

I do know how hard it is to see Ben so visibly uncomfortable. My own Cushpup was clearly miserable while we proceeded with diagnostics. I could not WAIT to give him his first trilostane capsule once we felt comfortable with the diagnosis. And thankfully, within just a few days he already started to show improvement.

Marianne

[Boxer_lover]

Ben goes in for his LDDS test tomorrow. I am a bundle of nerves. I just can't wait to start some treatment to offer him some relief.

[labblab]

I don't blame you one bit!!! We'll all be so anxious to find out Ben's test results. And regardless of the outcome, you'll be one step further down the diagnostic trail.

Please give Ben some huge pats for me,
Marianne

[Boxer_lover]

I am sitting here waiting on Ben's LDDS test to be completed. I think the waiting has to be the hardest part! I will post the results as soon as I get them.

[frijole]

We are all cheering you guys on. Hang in there! Kim

[Boxer_lover]

I just got Ben's results of his LDDS test. They are as follows:

Cortisol sample 1: 4.7 (1-5)
Cortisol sample 2 Dex: 5.6 high (0-1.4)
Cortisol sample 3 Dex: 4.7 high (0-1.4)

The vet is referring Ben to Purdue University for further testing as she says these results point to ADH Cushing's. So I am waiting to hear back from her as she was calling Purdue this morning. I think we are going to do an ultrasound next.

Head is spinning again.....

[lulusmom]

Those results are certainly positive for cushing's and I'm glad that your vet is referring Ben out to a specialist to do additional testing to determine whether Ben has adrenal or pituitary dependent cushing's. Not all dogs with pituitary dependent cushing's will suppress on the LDDS so I wouldn't jump to the conclusion that Ben has an adrenal tumor. In my opinion, an ultrasound would definitely be the next logical step and we'll all be interested to hear about the results.

You've done a great job in making sure that Ben is properly diagnosed and you can take heart in knowing that this part of the rollercoaster ride is just about over. Then on to treatment which we'll help you with every step of the way.

Glynda

[labblab]

I sure understand why your head is spinning, but these LDDS results definitely seem to be very significant in terms of Ben's diagnosis. If he does have an adrenal tumor, that could explain why his ACTH results were only borderline high even though he is so symptomatic. The ultrasound sounds like an excellent next step.

I know you are so anxious to get Ben some relief. But you've just made some big progress with these test results. And depending on the outcome of the ultrasound, it may turn out that Ben's Cushing's may actually be curable by surgery, if that is a route that you would want to consider.

Thanks so much for letting us know the test results, and please continue to keep us updated!!

Marianne

[Boxer_lover]

Purdue University wants to do a full "Cushing's Panel". I am not sure what that all includes but I am being quoted $800-$1200!!! Do you think I should just tell them that I want the ultrasound since all the other test that I have had so far points to the fact that he does have Cushing's?

[labblab]

What a timely question!! Take a look at this discussion which was begun yesterday:

http://www.k9cushings.com/forum/showthread.php?t=1896

If it were me, I'd opt for the ultrasound first. Then, depending upon the outcome, MAYBE consider the full panel (which tests all the other intermediate or "sex" hormones in addition to cortisol). But even if there seems to be a reason to perform the full panel, the price they are quoting is absolutely outrageous -- it should cost no more than maybe $500 max (and even that is the high end). The testing is performed by only one lab in the U.S. (University of Tennessee at Knoxville). So Purdue would simply be drawing the blood samples and injecting the ACTH agent. They would then ship the samples to Tennessee for analysis. Tennessee only charges $155 for the analysis, so it is hard to understand how Purdue could possibly be tacking on such an exorbitant additional charge. Is there any chance they are quoting you the combined charge for an ultrasound and also the full adrenal panel?

As you'll see from reading the thread that I've linked you to, there are differing opinions about the usefulness of UTK testing if elevated cortisol has already been established for a dog. Do you know whether both trilostane and Lysodren are being considered as treatment options for Ben? That might be one reason to perform the UTK panel -- to decide whether Ben's intermediate hormone profile might be better served by Lysodren rather than trilostane (Lysodren lowers most elevated intermediate hormones, whereas trilostane increases some of them).

Regardless, at this point, given Ben's ACTH and LDDS results -- I believe I'd opt for the ultrasound first. But I'd also first encourage you to ask Purdue to explain more specifically why they are recommending the full adrenal panel. Maybe they have a reason of which we are unaware. (I'd also ask them to explain the cost breakdown, since UTK only charges $155 for the test analysis...).

Marianne

[labblab]

Regarding the costs of the UTK full adrenal panel, here's a link to the results of an informal "poll" that we've set up:

http://www.k9cushings.com/forum/poll.php?do=showresults&pollid=23

So far, there have only been five participants, but you'll see that nobody who has responded thus far has paid more than $400 (and I believe the "top" amount is actually $350)...

Marianne

[Boxer_lover]

I will call and find out the details. I know that the office visit is $110 and they did say that Ben may need to stay there a couple days....

[lulusmom]

With the price quoted, I'm not sure that Purdue University is referring to the UTK adrenal panel when they told you that they want to do a full "cushing's panel." They may be referring to complete diagnostic tests done to actually confirm a cushing's diagnosis, like the LDDS, abdominal ultrasound, urinalysis, etc. You should call and ask them to let you know what tests their panel includes.

Glynda

[labblab]

DUH...:o :o :o

I'm sorry, Glynda's undoubtedly right. I've just had the UTK full adrenal panel on my mind this morning, and jumped to the conclusion that it was what was being referenced...

Marianne

[Buffaloe]

Wendy,

My dog was diagnosed with a primary adrenal tumor after a long diagnostic process. Her liver enzymes were high and she tested within the normal range on two ACTH tests. We never had a straight LDDS test performed but opted instead for the combination ACTH/LDDS test with a full adrenal panel at Tennessee. The results of this test indicated that she probably had an adrenal tumor. The obvious next step was a high quality ultrasound which clearly showed she had a huge adrenal tumor in her left gland. She had ALL of the cushing's symptoms.

The results of Ben's LDDS test indicate that he may have an adrenal tumor. Without question, I think your next step should be a top quality ultrasound. At this point, I don't see any significant value in any other testing. The ultrasound can be done at Purdue or it can be done somewhere else. Here in Phoenix, there is an Internist who travels with his high resolution machine and performs the ultrasounds for my gp vet, my surgeon and everyone else I know of. He charges about $480 and provides a very detailed written report.

I know what you are going through now is really tough. I remember it all too well. You have already completed all of the blood tests with the possible exception of an adrenal panel. That test alone would take ten days to get the results, cost you about $350 and would tell you virtually nothing about the possible presence of an adrenal tumor. We worked with great professionals and I'm sure they would tell you it is time for an ultrasound. You should do some homework and get Ben the best one you can find. Your gp vet should be able to help you. Good luck.

Ken

[Boxer_lover]

I just called Purdue to get clarification. The estimate they gave is given the assumption that no tests have been done. I told the guy on the phone that Ben has had the ACTH and LDDS test and now really just needs the ultrasound. He said that once the dr looks at all the info that this may be the course of action and the cost may be considerably less.

This is reassuring. I am applying for the care credit now so that I am ready in case surgery is the next step.

I feel a "little" better now. Thanks for all your support. I don't know what I would do without all your input and well wishes! :)

[Boxer_lover]

OK I have all Ben's medical records and his x-rays ready for the trip to Purdue tomorrow. Do any of you have any advice about specific things I should be asking this new vet?

[Boxer_lover]

Well Ben had all his tests at Purdue yesterday. He had X-ray, CBC, and ultrasound. The ultrasound showed bilateral enlarged adrenal glands with no obvious tumors. So the doc has diagnosed him with PDH. He stated that he was a "textbook" case. He had a rough day all around yesterday. They had to sedate him to do the testing and he did not react well and it was a long 2.5 hour drive home. I slept on the couch right by him all night last night to watch him. He seemed better this morning although he has not eaten since Monday.

The doctor has referred me back to my vet to start treating him with Trilostane. I am so scared to start it as well as worried about the financial aspect of it all. I hope it all works out and his symptoms are lessened soon.

[labblab]

OK I have all Ben's medical records and his x-rays ready for the trip to Purdue tomorrow. Do any of you have any advice about specific things I should be asking this new vet?
Wendy, I'm just now reading your last reply, and see that we all really dropped the ball as far as getting back with you about your question :o. I'm so sorry! But you should be back from your trip to Purdue now, so please do update us as to how things went.

Marianne

P.S. I see we were typing at the same time, and you've just typed a new reply. Good! I'll go and take a look at it...

[labblab]

OK, I'm back again. And Wendy, it sounds as though you finally have the diagnosis in hand! It has surely been a long road, but you've done a wonderful job of hanging in there for Ben.

I'm so sorry that this has been an extra rough time for him. But we have every reason to believe that he will respond positively to the trilostane, and that he will soon be feeling much better.

Has Purdue already recommended a beginning trilostane dose? If not, here is a quick "dosing" note prior to your conversation with your regular vet. If he wishes to follow the dosing recommendations of Dechra (the manufacturers of brandname Vetoryl), I'd encourage him to call Dechra's U.S. office in Kansas in order to get their most recent info. Even though Dechra's printed recommendations are to start dogs within a range of 1-3 mg. per pound, their verbal recommendation is to stay at that lowest end: 1 mg./lb. If either you or your vet have any dosing questions, you can call their technical rep, Dr. Allen, and I know he'll be happy to discuss this with you:

http://www.dechra-us.com/page/contact-us

Wendy, good job!!! And please give Ben some big pats for me...
Marianne

[Boxer_lover]

They are leaving all the dosing and follow up to my regular vet. I am going to order the meds online and then meet with her to discuss the dosage and such as soon as I recieve the meds.

I will take this info to her as I think she already had mentioned 180mg for him. He is 107lbs.

[labblab]

Wendy, I believe you will need to discuss the dosing with your vet beforehand, because all pharmacies will require a prescription. Plus, you'll want to have the dosing figured out in advance of your order so that you'll be receiving capsules/tablets in the appropriate size. You can order brandname Vetoryl from U.S. pharmacies only in 10 mg., 30 mg., and 60 mg. capsules. If you are choosing compounded trilostane, the pharmacy should be able to supply it in any dose that your vet prescribes. However, when first starting out, we often recommend that folks order their Vetoryl/trilostane in a strength that will permit tweaking both upwards or downwards relatively easily. So for instance, even if a dog is started on a dose of 60 mg., it might be better to place the first order in a 30 mg. capsule strength. Just a thought...

Also, if you are considering compounded trilostane, several of our members have used Diamondback Drugs with confidence.

Marianne

[labblab]

P.S. Since 120 mg. Vetoryl capsules are not yet available for sale in the U.S., I believe that American residents are still able to import 120 mg. capsules from a U.K. internet pharmacy named Masters Marketing. Here's a link to their webpage for Vetoryl:

http://www.masters-uk.com/veterinary/search.php?mode=search&page=1

Even though all dosage strengths are listed on the page above, I think that only 120 mg. (and perhaps 10 mg.?) capsules can be imported into the U.S. at this time:

http://www.masters-uk.com/veterinary/home.php

Marianne

[Squirt's Mom]

Hi Wendy,

Way to go mom! :) You have pushed to a diagnosis and now have a plan of action. Wonderful!

I am sure that you will handle the Trilo just fine. You are a great mom who keeps a close eye on her baby and that is critical in treating them so I have no doubts you and Ben will do great.

Hugs,
Leslie and the girls - always

[Boxer_lover]

I just placed the order for Ben's first month's supply of Trilostane. I am excited and aprehensive about giving it to him. I hope it puts an end to his discomfort.

[labblab]

Oh, I hope so too, Wendy!! Please let us know as soon as the medication arrives and you start Ben off.

Good luck and best wishes,
Marianne

[zoesmom]

Hi Wendy and Ben -

Just reading thru your thread for the first time and glad to see you have a sound dx for Ben. Just curious about what his starting dose is going to be? How many mg and once or twice a day? Wish I'd read your thread sooner as I would have recommended ordering from pethealthpharmacy.com - in AZ. I found them to be one of the cheapest sources for compounded trilo. When we started with trilo, it was only available in UK and we used the dechra version from there and it was pretty big bucks for a dog of Zo's size. She then weighed about 85 lbs. Once the compounded version became available here in the US, I switched and the savings was worthwhile - and we never had a problem with the compounded trilo from pethealth.

Anyway, with Ben being a big boy - at 107 lbs. (or about 48.5 kg), a starting trilo dose at the low end of the range would be about 50 -100 mg. If he's still in the early stages of cushings (based on his liver enzymes and lower ACTH), I don't think a starting dose over 90-120 mg. would be wise. In starting Zo on the trilo (and her being our gp vet's first trilo patient in 2006), we quickly found out that her dose needed to be lowered several times, even tho' we were using a dose within the then - recommended range of 2 - 10 mg/kg. (She was started at 180 mg. sid) We had to finally fall back to 40 mg. and work her back up from there over many weeks. She eventually was able to tolerate that high dose that originally made her so sick. But just wanted to point out, that with bigger dogs especially, starting out lower is often the best way to go. Marianne's suggestion of getting smaller strengths that can be combined and allow some tweaking was a good suggestion. And that's what we did in the beginning as we had 15 and 45 mg caps originally and later 30's and 60 mgs. caps.

Once Ben settles into good control on a specific dose (which sometimes doesn't happen until the third or fourth month), then you could easily order the exact strength he needs in one capsule. In fact, even after a couple of years, I was using the 120 mgs with combinations of smaller dose capsules (which allowed me to tweak Zo's dose as needed.) Over the years, she took everything from 120 mg - 180 mg (sid soon became bid) and even higher for awhile.:eek::eek::eek:)

I promise, this will all get easier and less stressful in time, and you will develop a good feel for how Ben is responding. But in the beginning, I always suggest that owners be cautious with the dose. Also, would suggest starting to measure and record Ben's daily water consumption (it can be tricky with other dogs but it's possible). If you do this before starting tx, and then continue after the trilo arrives, that will give you a good yardstick to measure the trilo's effect. And no way, no how, should you let your vet decide to increase his dose during the first 30 days or so. Even if that first ACTH on tx comes back still slightly on the high side, wait it out until that second ACTH at 30 days. So many times, we've seen dogs whose cortisol was just beginning to come down at 10-14 days and then the vet wanted to up their dose at that point . . . only to have trouble erupt. Of course, any signs of too much trilo in those first few days and weeks and that's a whole different ballgame, as I'm sure you've read.

So if you can let us know what dose you'll be using and definitely, keep us posted on Ben's progress in the first few days. Sue

[Boxer_lover]

The vet has said to start him @ 180mg per day. She did not say if I should give it to him all at once or at intervals throughout the day. I had planned to check with her when the meds arrive. I ordered 3 boxes of 60mg pills for his first month's supply. It cost me right at $130 (with a first time buyers discount).

[Harley PoMMom]

Hi Wendy,

Although I am not a Trilostane user for my pup, I do think what the vet is starting Ben at is too high a dose for him. I am so hoping with Sue's post and the other one that I am going to post here that you will ask your vet about this starting dose and maybe lowering it. Dr Allen is a representative for Dechra.


Hmmmm....Terri, I am thinking that there is some misunderstanding about this. As it turns out, I too have had occasion to talk to Dr. Allen recently. I had some general questions that I wanted to ask him, and initial dosing was one of them. He told me that he is personally recommending that people start at the lowest end of the Dechra range, which is 1 mg. per pound (and not 1 mg. per kg.). I don't think I misheard him, because we went on to discuss the differences in Dechra's recommendation from UC Davis.

He stressed that they are in no way challenging any vet's decision to follow Davis' guidelines if that is their preference. But the dosing protocols are not identical. I really wish that there would be written revision to Dechra's chart, in order to clarify this revised recommendation. But barring that, I will encourage people to contact Dechra directly in order to get the information first-hand in the event that they want more info. Here's contact info for Dechra's U.S. office: "Contact Us" (http://www.dechra-us.com/page/contact-us)


Marianne

Love and hugs,
Lori

[zoesmom]

Yes, I agree with Lori. That 2 mg/kg of weight (the lowest end of the original dosing range of 2 - 10) is not reallly that much different from Dr. Allen's 1 mg/lb of weight. For Ben, if you used the 2 mg formula and multiplied it by his weight of 48.5 kg, you get just under 100 mg as a dose - much more reasonable as a starting dose, IMO, than that 180 mg! Using the other formula that Lori mentioned, Ben's dose would be 107 mg. - only slightly higher.

I would feel much better if Ben was starting at 90 mg - and possibly even 60 mg sid. Possibly, you could order some 30 mg in addition to the 60 and then start him at 60 or 90 and go from there, depending on how Ben does. I'd certainly press your vet about that. Not to alarm you, but I went thru the scary 'too much trilo' thing with Zo in the beginning and I hate to see anybody else's doggy go thru that. Zoe's cushings was caught early, as Ben's may have been, and whether that played a part in her reaction, I don't know. But her ACTH at diagnosis was only like 26 or 27 and ALK was in the 300-400range, if I recall.

Also, make sure you give trilo with food. Best to give AFTER a meal, as sometimes they decide not to eat after getting the pill. And another thing my vet - also new to trilo- didn't seem to know was that the ACTH test (to monitor treatment) must be done around 4 - 6 hours after a pill is given. Found that out here, luckily. So we usually went in around noon for the test (with pill given between 7 and 8 am.) Also, on test day, they suggest giving the trilo with a very light meal, rather than a full one.

A gp vet who is using trilo for the first time doesn't have to be a negative. Our gp vet was willing to listen to me, trusted my judgment of what was going on with MY dog, and was eager to learn right along with me about the drug. I often printed out info from here and took it to her and she was happy to read it. Open mind required, in other words. With some vets, the education process may require a certain amount of tact but if they aren NOTwilling to listen and learn - even from owners, then moving on to another vet or an IMS may be necessary . . . . for your dog's sake. :) Hopefully, your gp vet is the open-minded variety. ;);) Sue

[Boxer_lover]

Well I would have to go with either 60 or 120 mg to start since I bought 60mg pills to start and cannot afford to buy more right now.:(

I will talk to my vet when I take my youngest in for her followup appointment for her puppy mange :eek:

I hate the thought of making him sick when the point is to make him more comfortable. I understand that it is a process :confused: I am thankful that my mom (Ben's grandma!) is coming to stay with us when he starts his meds so that I will not worry so much about him while I am at work.

Do you reccommend giving the dose all at once or twice a day? Obviously if I start with 120 I would have to give him 2 pills.

[labblab]

Wendy, if it were me, I'd probably start Ben off with 120 mg. once daily in the morning. Since he weighs 107 pounds, 120 mg. isn't very much more than the 1 mg. per pound that Dechra is verbally recommending to people. And since he is so symptomatic, I know you are really hoping to get him some relief sooner rather than later. However, I also can't argue with Sue's suggestion to start even lower: at 60 mg. once daily. That dose would be more in line with the more conservative dosing recommendations of UC Davis, which is to begin dogs at 1 mg. per kg. So how's that for "waffling" with my answer? :o

I really do encourage you to call Dechra's U.S. office and talk with their technical representative, Dr. Allen. I have spoken with him a couple of times, and he has been very helpful with my questions. I know he'd be happy to consult with you about Ben's starting dose. Here's Dechra's number: 913-327-0015 (and just follow the prompts for "technical assistance" if nobody answers the phone directly when you call).

Whichever dose you decide on, I would give him all the medication in the morning to begin with. Both Dechra and UC Davis recommend starting off with once-daily dosing, and only switching to twice-daily dosing in the event that you end up seeing symptoms rebounding later in the day even though his cortisol level seems to be well-controlled per his monitoring ACTH tests. One of our members is a veterinary endocrinologist, and he has told us that dogs who are dosed twice-daily may be more likely to have problems with cortisol levels going too low. So unless there is a reason to shift to twice-daily dosing (and being a diabetic dog would be one of those reasons, which Ben is not), it probably makes more sense to just begin giving all the medication in the morning.

As people have already said, trilostane should always be given with food since that allows the dog to metabolize the drug more efficiently, plus it helps to buffer the stomach. On the morning of a monitoring ACTH test, the trilostane should be given along with a small, nonfatty meal.

Do let us know what you decide upon, and good luck once you get started!

Marianne

[labblab]

Me again, with a "compromise" suggestion...

Dechra's Treatment and Monitoring Flowchart recommends that you generally don't change the trilostane dose during the first 30 days of treatment unless your dog does not appear to be doing well or the monitoring ACTH results show that the cortisol has dropped too low. However, this is assuming you have started out within their recommended dosing range. If you wanted to be even more conservative and start out at 60 mg. daily, if his cortisol was still really high at the first 10-14 ACTH testing mark, then I would think you might safely bump his dose up to 120 mg. at that point in time. Perhaps a strategy that you might want to talk over with Dr. Allen if you do decide to call him. :)

By the way, if we haven't given it to you before, here's a link to Dechra's U.S. Treatment and Monitoring Flowchart:

http://www.dechra-us.com/File/vetoryl_Treatment_and_Monitoring_Flowchart.pdf

Marianne

[Boxer_lover]

I just got copies of all of Ben's test results from Purdue, so I thought I would post them: These are the items not within the normal scale.

Urinalysis:
Specific gravity 1.004 (there was not a scale on this, but I know others have asked about this)

Chemistry:
ALT 308 (3-69) :eek:
ALP 810 (20-157) :eek:
GGT 19 (5-16) :eek:
Lipase 3094 (104-1753) :eek:

Hematology:
Seg Netrophilis 12.33 (3-12)
Lymphocyctes (.13) 1-5)
Eosinophils 0 (.10-1.25)

I hope to have Ben's meds on Tuesday. I talked to the vet and she stands by the 180mg dosage. I was sure to ask how many dogs she had treated on trilostane and was assured that it was several.

[Harley PoMMom]

Was Ben ever checked for pancreatitis? You see, the lipase enzyme, which is very elevated on Ben's lab work, can be indicator of pancreatitis. Other things can cause the lipase to be high, but it is usually the pancreas. Was a cPLI or cPL test done to confirm pancreatitis in Ben? If not, I would strongly urge you to have this done.

If you are going to go with the 180mg of Trilostane, then more than likely Ben will have some GI upset. The GI upset may cause a pancreatitis attack. This may or may not happen, I just want you to fore-warned incase it does happen. Pancreatitis attacks can be life-threatening and a pup needs medical attention ASAP.

Love and hugs,
Lori

[Boxer_lover]

I don't believe he was tested directly for pancreatitis. What is the test for that (he has had so many!). His meds came today and the plan is to start him on them in the morning. Ben's grandma (my mom) is staying with us so that he can be closely monitored while I am at work. I just pray that he doesn't have a bad reaction to the meds and that he gets some relief soon!

[zoesmom]

Hi - Hmmmmm. Wonder why your vet is being so insistent about that dose? It seems to me a vet would want to avoid any risk of starting too high and inducing addisonian symptoms when they can start the dog off at a lower dose and increase if necessary - and thus avoid a crisis.

If you are still going ahead with the 180 mg, then I'd strongly urge you to ask for some prednisone to have on hand at home. Just in case the dose is too high . . . and I'm worried that it is, at least for starting out. If you see any signs of loss of apetite, vomiting, diarrhea, lethargy, weakness in legs, then the pred can help counteract the effects of the trilo. Hoping you'll post a daily report on Ben's progress. Also, if Ben were to be suffering from pancreatitis - as Lori mentioned - then you wouldn't want to be starting the trilo until that's addressed. The high lipase could be a tipoff. A call to the vet might answer the question about if any tests (cPLI or cPL) were done to check for pancreatitis. Sue

[Boxer_lover]

I gave Ben his first dose of Trilostane this morning. So far so good! :D He already seems more active. I know I have to be imagining it.....but here's to hoping!!! ;)

[labblab]

All fingers and paws crossed at my house that Ben will continue to do well! :)

Marianne

[lulusmom]

You may not be imagining things. It is known that within 20 minutes of administering a dose of Vetoryl, cortisol levels can drop quite a bit. Hopefully, you'll continue to see improvements every day.

We are also keeping fingers and paws crossed that things go smoothly for Ben.

Glynda

[Boxer_lover]

Thanks Glynda and Marianne. I hope so too. He did eat again within about an hour or so of taking the meds so I guess he doesn't have a bad tummy! Good sign. No diarrhea either...I know it is early! :D

[Boxer_lover]

Today is day three of Ben's treatment with Trilostane. I have seen improvement in him already!:D I hope I am not just looking too closely for good results. He seems to panting, drinking and peeing less and his eyes look more bright than I have seen in a while. :)

I happy to report no side effects so far. So all is good!!!!

[ChristyA]

That is so good to hear!!! Yayyyy for Ben. I hope it all continues to improve for him and you.
Christy

[zoesmom]

Me, too! :):) Sue

[Boxer_lover]

Thanks Christy and Sue. I will try hard not to give a day by day recap!! lol :D:D:D:D

[zoesmom]

Oh, NO.....please DO give a day by day recap. That's what we want and need to hear!!!!!!!!!!!!! Sue

[maggiebeagle]

It gets a bit easier every day. :D

[Harley PoMMom]

Hi Wendy,

Sue is definitely right, we love details ;):D This also helps our new members and their pups who are just starting out their journey with this dratted disease, at least I believe so.

It's also a really nice journal for you and Ben! So...keep them day-to-day details coming. :) please!

Love and hugs,
Lori

[littleone1]

I'm so glad to hear that Ben is doing well with his treatment.

Terri

[ChristyA]

Oh no,,you must give recaps. We will worry too much!
Christy

[Boxer_lover]

Well, in that case!!!:D

Ben is in day 5 of his treatment and is doing well. He gets up and cuddles more than before. He used to get hot and uncomfortable after only a few minutes. He layed on my lap for about a half hour this morning. I was in heaven!! :):):):)

I am happy to report he is still not showing any side effects! :D:D:D

I schedule his next ACTH stim test for the 28th so that will be the true test of how he is doing.

Thank you all so much for your support and kiss all your four-legged kids for me!

Wendy

[ChristyA]

It is wonderful to cuddle again isn't it? I can still remember how Dexter smelled - the best smell on earth.;)

[Boxer_lover]

You guys said I could post daily so you asked for it!! :p

Ben is doing soooo much better. This morning he followed me around the house as I was getting ready for work. Normally he just lays around. He gave me kisses and sat down to shake paw as I was going out the door.

My heart is so happy. I pray that this improvement continues and that all the other cushpups can find the same improvement.

Wendy

[labblab]

Oh Wendy, this is terrific news and PLEASE keep updating us daily!!!! :) :)

It brings tears to my eyes to hear how Ben is "returning" to you...

I, too, will pray that this improvement just goes on and on and on and on..............

Marianne

[lulusmom]

I know how you feel...I was elated when I saw my two babies start coming back to life with treatment. Fingers & paws are crossed that Ben will continue to amaze you with his improvements.

Glynda

[zoesmom]

YAYYYYYYYYYYYYY, Ben! Terrific. Sue

[Harley PoMMom]

:D:D:D I'm smiling ear to ear! :D:D:D

[Boxer_lover]

Thank you all so much for your well wishes. Tomorrow will be the one week mark and I am excited to measure Ben's girth. Keep in mind he was a huge boxer to begin with...but he was 3ft around when I measured him last week! I can already see wrinkled skin showing up!

Is there a way to post pictures? I would love to show his progress. :D

BTW when I went home for lunch he tried to jump up on me!!! That hasn't happened in years!!

Wendy

[labblab]

Yes, Wendy, it's easy for you create your own photo album for Ben. :)

Just take a look at this link on our site "FAQ" menu:

http://www.k9cushings.com/forum/faq.php?faq=vb3_user_profile#faq_vb3_albums

And in order to find your "User Control Panel" that the link mentions, just look at the menu bar at the top of every page. Your "User CP" (for User Control Panel) is at the far left-hand side of the menu bar. Just click on it and you will be taken to your CP.

I can hardly wait to see pictures!
Marianne

[mypuppy]

Hi Wendy,
Welcome to you and Ben from me and my Princess (7 year old lab). I want to say how enlightened I was to read your very happy posts. As you, I learned what heaven feels like when I too had my old pup back after being in remission for 5 months from all her Cushings symptoms. She was jumping, fetching, following, playing, running--you name it, she did it. I think the best feeling for me while she was remission was the fact that she was back to sleeping in my bedroom every night, against sneaking out to sleep in the hardwood floors to stay cool. It broke my heart not having her there by my side each night--It just was not complete or a good night's sleep for that matter. I am so thrilled that you have been blessed with seeing improvement in Ben's behavior and symptoms. It is just what we look forward to while we are on this not so joyous ride. You are doing a wonderful job with him, so keep up the great work, stay on board here because this forum will be a most valuable asset in the course of Ben's treatment, and you will meet some very wonderful, caring individuals who will provide as much support as willingly possible. Welcome to our family. I'm sending you some tight hugs and lots of belly rubs to your precious Ben and the little boxers as well. Luv ya bunches, Jeanette and Princess ps: looking forward to reading some even more good posts from you and seeing some more pics of the babies....

[Boxer_lover]

Thanks Jeanette, I have just posted a bunch of pictures of my babies!! I take at least one picture of them a day...I am a proud mom! :D:D:D:D:D

[Loladog]

Hi Wendy,

I just took a look at your photo albums and I love the Boxer pictures!!! Yes, Boxers are great and they are the best at cuddling! :D

I'm so happy to hear that things are going well with Ben and his treatment. You are doing such a great job with him.:)

[labblab]

AWWWWW, Wendy, the photos are GREAT!!!!!!! :) :D :) :D

Marianne

[Boxer_lover]

Today marks Ben's one week of treatment. He is doing great! This morning he even wanted to play!!! :):):) I haven't seen him do that in a couple of years. I am very happy.

I hope the ACTH test next week will confirm that he is doing much better as we can already see by his actions.

Thanks for all your support as always!

I am glad you you all liked my pictures!

[Boxer_lover]

Just checking in with everyone. Ben is still doing really well on his medication and still no side effects.

He has is ACTH test on Wednesday.....

[Harley PoMMom]

I am so very happy that Ben is doing so well. Will be looking for the results for the stim, and just a gentle reminder...with Trilostane a pups electrolytes have to monitored also with every stim. ;):)

Love and hugs,
Lori

[littleone1]

I'm glad that Ben is doing so well with his treatment. I know how I felt when my Corky was getting back to his normal self. I hope you get good results on his stim.

Terri

[lulusmom]

Way to go Ben!!! We'll be anxiously awaiting the results of the acth stim test.

Glynda

[EllyAugie]

Hi Wendy, just wanted to welcome you to the group and sending my best wishes for Ben.
The dedication for helping others in this caring group is amazing.
Hugs
Elly and Augie

[Casey's Mom]

Hi Wendy
Just wanted to chime in and let you know that is great news for you and Ben!

Hugs,

[Boxer_lover]

Just wanted to say that this morning was great. Ben wanted to play! He jumped up and barked and then we played "tuggie" for a few minutes. This hasn't happened in a couple years. I am so blessed! :D:D:D:D:D:D:D:D:D:D

[labblab]

CONGRATULATIONS!!!!!!!!!!!!!!!!:) :) :) :) :)

Marianne

[mypuppy]

Wendy,
Awwww! That's just soo great! I am so happy for both of you. It's the best feeling in the world isn't it? Enjoy each other. xo Jeanette and Princess

[littleone1]

This is wonderful news, Wendy. :D You're doing a great job.:)

Terri

[Boxer_lover]

We just got back from Ben's ACTH test. We won't have the results for a couple of days but I did have his electrolytes checked and they are completely normal! :D:D

Way to go Ben!!!

[Squirt's Mom]

WooHoo, Ben and Mom!!!

[Sanja]

Hi everbody. We have two dogs. Almost 9 years old boxer, Rio, and 8-9 month old "girl". We found her on January 3rd this year, about midnigth, hungry, dirty, tired little dog. And took her home. Our boxer was very happy to have a little sister to play with her. After few weeks he was less happy, more tired, drinking a lot, left wet his bed several nights. At the first time we thought it was his reaction - he was not only pet in the home. But, before 10 days, after blood test, ACTH stimulation etc. his vet said - Cushing. So the story began.

We live in Zagreb, Croatia, and the prescribed medicine for him (Vetoryl - trilostane) is not registered in Croatia. We have several option - order this medicine by mail (our vet wrote international prescription), order in special store for foreign drugs (1 box with 30 tbl a 60 mg is 120 euros) or travel abroad and buy. We ordered by mail, from UK but we are still waiting (we suppose our custom is slow), but in the meantime my brother who lives in Germany bought 2 packages (we sent him prescription), gave this to the driver of the bus which travel to Croatia and tomorrow morning Vetoryl will be here. Of course, we are reading everting about Cushing so we found this web and the story about Ben. Wonderful news for us. No side effects, good improvement. Ben, we send you a lot of kisses and wish you luck. We are step behind Ben, so we will read his diary every day and hope our Rio will be the same luck. Sorry for my bad English, but thanks you (everybody on this forum) for being here and support us.

__________________________________________________ _________________________________________________

*admin note:

Sanja, your post has been copied and used to create a topic especially for Rio, where you can post information and updates about Rio and where we can reply to you

Your topic is called "Rio, our almost 9yr old Boxer" and if you click on the link just below, it will take you there to your new topic :
http://www.k9cushings.com/forum/showthread.php?t=2026

[Boxer_lover]

Sanja,

The picture of your boxer is so cute. I have two other brindle boxers besides Ben. I love them so much. The are so fun and loving.

I hope you are able to get the medication because it has done wonders for my Ben. Even here in the states the medication is expensive, but well worth it in my opinion. Ben hasn't felt so good in a few years. I thougth all along he was just getting older until the symptions of excessive thirst and urination and panting began. As you can see by my thread, we went through a bunch of test before being diagnosed as cushings. Given Ben's reaction to the medication, I know if was the right diagnosis.

I wish Rio the best and let me know how he is doing. I have a soft spot for boxers.

Wendy and Ben

[Sanja]

Hi Wendy,
I agree. Boxers are someone really special. Rio is our second boxer. We had Don (1994 - 2001) and when he lost us we bought Rio. Now, we have him and Mala (abandoned dog, we found her this January). We bought Vetoryl on the web, in UK, four packages and two in Germany. It is expensive, but it is OK with us - there was no doubt: buy or not. If we buy in Croatia in specialised store for foreign medicine it would cost about 350 $ for a month - 2 x 60 per day, but when we buy Vetoryl (trilostane) in UK it is 130 $ for a month. And about 100 $ for each ACTH stimulation. Average wages in Croatia is about 1.000 $ per month. Never mind how much it cost, I only hope it will be good for Rio and without side-effects.
Tomorrow morning we will start with treatment.
Your experience give me hope.
Ben, wish you luck, happy and comfortable life.
Best wishes to both of you,
Sanja

[Boxer_lover]

I just got Ben's ACTH test results back and they are low :eek:

Sample one: < 1.0 (1-5 ug/dL)
Sample two: 1.6 (8-17 ug/dL)

The doctor told me to lower Ben's dose from 180mg to 120mg and to retest in a month. I asked about him being in Addison's crisis (not sure if you would call it that?) She said since all his electrolytes are perfect that he is not in danger. I hope this is the case! He has been so much better...

So 120mg starting tomorrow! At least it will be a little more wallet friendly!

[zoesmom]

Wendy -

Yes, those results ARE low. The <1.0 is vague (but extremely low, regardless) and the 1.6 is definitely verrrrrry borderline. If it were my dog, I would also wait several days before restarting the lower dose. Like 3 or 4 . . . minimum. Possibly 7! He was on 180 mg, right?

Was Ben showing any other signs of low cortisol (loss of appetite, lethargy, weak legs)? With his electrolytes ok and if he showed no other signs of trouble, then a few days off is probably adequate. But just remember that even with a lower dose, his numbers could continue to drop over the next 30 days, or longer. So if he's already gone that low, I'd really be proceeding cautiously. Of course, he could eventually end up back on those 180's so, as far as cost, don't despair. At one point, I had all sorts of capsules on hand: 45's, 60's, 120's, 180's. I learned to order some 30's to mix and match Zoe's dose as needed as she was all over the charts, initially. And of course, it didn't take that long to use them all up. Finally, about a year or two in, I was able to start ordering the exact strength that she needed, compounded into single capsules, and tho' her dose did fluctuate after that, it wasn't as much or as often.

I think I mentioned about Zo's rough start on trilo. At 83# she started off on 180 mg. sid. Then Day 3, big trouble (the whole works!) Stopped trilo for just 2 days and restarted her at 120 mg. sid. Again, on Day 2, trouble returned, just as bad. Stopped it again for almost a week, I think.

After a couple more false starts and stops, she finally did ok on 40 mg sid. After that, we increased her dose slowly, over 2 or 3 months time, until we saw adequate response at around 120 mg. She stayed at that dose for awhile, but then her cortisol began creeping up and eventually she was back on the 180 mg (that became bid) in order to get sufficient control. But having worked her dose back up gradually, she was then able to tolerate the much higher doses. So I'm just sayin' . . . .

The bigger dogs, for some unknown reason, seem to do much better when eased into their necessary dose. Sue

[labblab]

I just got Ben's ACTH test results back and they are low :eek:

Sample one: < 1.0 (1-5 ug/dL)
Sample two: 1.6 (8-17 ug/dL)

Hi Wendy,

Ben's "post" ACTH result is not as low as it may seem to you, since the normal ranges that you've shown in parentheses are those for a dog without Cushing's, and not the desired therapeutic range for a Cushpup under treatment. However, you definitely don't want him to go any lower! Per Dechra's printed recommendations, the ideal "post" result for a dog on trilostane is between 1.45 - 5.4 ug/dl. So Ben is right there "knocking at the door" of being too low. And his "pre" result of less than 1.0 also raises red flags.

The dosage decrease is definitely warranted, especially since his cortisol has dropped this much in just two weeks time. The fact that his electrolytes are normal and he seems to be feeling so good are big pluses. So hopefully this dosage decrease will be just what he needs to maintain the benefits of the medication without dropping his cortisol too low. But 30 days is a long time to wait before performing another ACTH test. Dechra recommends retesting two weeks after any dosing change. And given Ben's current results, I'd think you would really want to be sure that his cortisol is stabilizing appropriately on the dosage decrease. I know you will continue to monitor him really closely. But even if he continues to look good, I would not feel comfortable waiting for a month before retesting. Here's the relevant quote from Dechra's Treatment and Monitoring Flowchart (http://www.dechra-us.com/File/vetoryl_Treatment_and_Monitoring_Flowchart.pdf):


Individual dose adjustments and close monitoring are essential.
Re-examine and conduct an ACTH stimulation test 10-14 days after every dose adjustment.

And if he starts to look "off" to you in any way, I'd take him in immediately. I know what a relief it has been to see him improving, and I'll keep my fingers crossed that this dosage "tweak" will be just what he needs!

Marianne

[Boxer_lover]

Marianne, do you agree with Sue that I should not give him meds for a few days before starting the lower dose?

[labblab]

Marianne, do you agree with Sue that I should not give him meds for a few days before starting the lower dose?
You know, I was toying with the same question in my own mind when I wrote my earlier reply (Sue and I were typing at the same time). And I'm really on the fence -- I think there's justification for either decision. But if it were me -- given the fact that Ben's electrolytes were entirely normal and behaviorally he is doing so well -- I think I'd just drop the dosage without a break, and watch him really closely (as if you're not already doing that!). With him doing so well, it would be hard to watch him backsliding. But that's also one reason (no break) why I really would not wait for a long time before testing him again.

Marianne

[Boxer_lover]

I called my vet and posed the questions to her. She said since he is doing well symptomwise that it is ok to continue with the lower dose. I also asked about a ACTH test sooner than 30 days and she said again that he should be good to go for 30 days since he is doing well. We left it at we would "play it by ear". So if I see any signs of him doing worse, then we would go ahead and do the test sooner.

[labblab]

Hi Wendy. Does Ben seem to be doing OK on the lower dose?

Marianne

[mypuppy]

Hi Wendy, Marianne, Sue,

I'm sorry to chime in and perhaps add some more doubt and confusion for mostly Wendy. I felt compelled to give my 2 cents worth here only because if you recall 6 months ago I was strongly warned by several here when a cush pup's levels drop as low as Princess's dropped, they SHOULD NOT restart treatment until they become symptomatic again. Wendy, I'm not sure if your Ben's symptoms are under control from his initial 180mg dose??? Marianne, Princess's 14 day stim after starting her 2 - 60mg pills showed a pre-cort. of 1.0 and post of 1.1. Her IMS instructed me me to stop the meds for one week and restart her at 1 - 60mg pill. At that point I was posting on the forum and I was also advised to contact Dechra directly, and Dechra in fact also recommended NOT to restart Princess's Vetoryl unless she was symptomatic and reached a post of over 9 or 9.1. Wendy, I haven't been really keeping tract of Ben's thread from beginning, and there may be other issues I am not aware of. But Marianne, shouldn't the same guidelines I applied for Princess apply for Ben, IF he's not symptomatic at the present time? Please clarify. Thanks all, and sorry for stirring up some trouble. Just want to make sure Ben gets the same advantage my Princess did. For now, Princess is finally starting to improve a tiny bit on the lower dose, but we shall see where her levels are at Monday's stim. I will certainly post those when I have them... Love you all bunches...xo Jeanette

[labblab]

Marianne, Princess's 14 day stim after starting her 2 - 60mg pills showed a pre-cort. of 1.0 and post of 1.1. Her IMS instructed me me to stop the meds for one week and restart her at 1 - 60mg pill. At that point I was posting on the forum and I was also advised to contact Dechra directly, and Dechra in fact also recommended NOT to restart Princess's Vetoryl unless she was symptomatic and reached a post of over 9 or 9.1.. .. But Marianne, shouldn't the same guidelines I applied for Princess apply for Ben, IF he's not symptomatic at the present time? Please clarify. Thanks all, and sorry for stirring up some trouble.
Jeanette, most definitely you are NOT stirring up trouble! Your questions are very reasonable ones. And as I wrote earlier, I think there are arguments on both sides as to whether or not to give Ben a trilostane break. However, here's the main difference that I see between Ben's situation and that of Princess...

Dechra's published guidelines state that the desired therapeutic "post" stim result is one between 1.45 - 5.4 ug/dl. So Ben's "post" result of 1.6 is within that desired range, whereas Princess was not: she was below that threshold with a "post" result of 1.1 (with virtually no stimulation from her "pre" result of 1.0). If you revisit Dechra's Treatment and Monitoring Flowchart (http://www.dechra-us.com/File/vetoryl_Treatment_and_Monitoring_Flowchart.pdf), you'll see that their actual recommendation would have been to leave Ben's dose unchanged with a "post" result within that 1.45 - 5.4 window. However, that would have seemed crazy to all of us, given how significantly his cortisol came down within the first two weeks of treatment (plus, with a "pre" stim result of < 1, which is somewhat worrisome in itself). So it definitely seems both reasonable and necessary to decrease Ben's dose. As for Princess -- with her "post" result of 1.1, the published instructions are different, and do recommend a medication break until the cortisol has increased and symptoms rebound.

So what about a break for Ben, too? Is there really that much difference between Princess's result of 1.1 and Ben's result of 1.6? Hard to know, and that's where the decision really just becomes a judgement call. As I said, I'm torn. But given the fact that Ben's electrolytes were normal and he has been behaving so robustly over the last few days, if he were my dog, I'd be willing to go ahead and continue dosing him on the reduced level. But at the least indication of his being overmedicated, I would immediately stop the trilostane and request additional testing.

Marianne

[mypuppy]

Marianne,
Thanks for clearing that up for all of us. It is a tough call, but I think you make a great point in saying that continuing Ben on the lower dose should definitely be followed up with an earlier scheduled stim. Btw, I think I shall print out Dechra's guidelines for Monday's stim in the event my new IMS questions anything. Thanks again. Luv ya dearly....xo Jeanette

[Boxer_lover]

Jeanette and Marianne,

I appriciate both of you and your input I think disagreement causes discussions and that is a great part of this website.

Ben is still doing great and I did not stop treatment but did lower to 120mg as of Tuesday. BTW today is his Birthday...the big 9! He is doing great. He was running through the house today and he is chewing on his birthday bones. :D I cannot not tell you how much energy he has compared to the last couple of years. :D:D:D

Of course I am keeping a close eye on him and will insist on the Stim test being done sooner if I see even one little sign that he is going backwards..

Again, I appriciate your input and feel free always to disagree because that sparks conversations and the posting of good information and resources.

Thanks to you both.

Ben is giving you eKisses!

Wendy!

[frijole]

Happy Birthday Ben!!!!! Extra treats - they are on me! Kim

[Harley PoMMom]

Happy Birthday Ben!!!

Love and hugs,
Lori and Harley

[labblab]

HAPPY BIRTHDAY, BEN!!!!!!!!!!!!!!!!!!!!!!! :D :p :) :D :p :)


(And here's a P.S. for Jeanette:)):


Marianne,
Btw, I think I shall print out Dechra's guidelines for Monday's stim in the event my new IMS questions anything. Thanks again. Luv ya dearly....xo Jeanette
Jeanette, if you print out the Treatment and Monitoring Flowchart (http://www.dechra-us.com/File/vetoryl_Treatment_and_Monitoring_Flowchart.pdf), do be sure to include the written "product insert" instructions at the end. That's the place where you'll find this complete recommendation:


If the ACTH stimulation test is <1.45 μg/dL (<40 nmol/L) and/or if electrolyte imbalances characteristic of hypoadrenocorticism (hyperkalemia and hyponatremia) are found, VETORYL Capsules should be temporarily discontinued until recurrence of clinical signs consistent with hyperadrenocorticism and test results return to normal (1.45-9.1 μg/dL or 40-250 nmol/L). VETORYL Capsules may then be re-introduced at a lower dose.
The Flowchart itself simply says to stop the trilostane for 3-7 days before resuming...

Marianne

[mypuppy]

Marianne,
What would we do without you? You always seem to be right there making sure we cover all bases. I was trying to find the info from Dechra's treatment guidelines flow chart, and couldn't. I didn't realize it was included in the product insert info. Thanks again. Luv ya. xo Jeanette ps: Licks to the lab from my lab....haaaaaaaaaaa

[mypuppy]

Wendy,
Yes, that is the beauty of this wonderful forum and people. We'd be lost with out it. Now I want to wish Ben a very special birthday and continued improvement for many, many years to come. Luv ya both, xo Jeanette and Princess

[MiniSchnauzerMom]

:D:):D Happy Belated 9th Birthday, Ben!! :D:):D

Hope you enjoyed chomping up your birthday bones!

Louise

[ChristyA]

Happy Birthday Ben,,,you are one lucky dog!

[Sanja]

9 kisses to Ben from Croatia.
Sanja & family, Rio & Mala

[Boxer_lover]

Ben thanks you for all his birthday wishes and sends kisses back to you and your furbabies! :D:D:D:D:D:D

[brandysmom]

Happy Belated Birthday Ben!! Hope it was the best ever!! :D

[Boxer_lover]

Today marks Ben's 3 weeks of treatment. Even with the lowered dosage, he is still doing great. I have not seen one side effect. He has been great! He wanted to play this morning and that made my heart very happy.

I took on a second job to pay for his tests and meds and I don't regret it one bit (well except for being away from my babies!)

Wendy

[mypuppy]

Hi Wendy,
That is just so sweet to hear. So glad Ben is doing so great on his treatment and that your heart is happy again. I'll keep saying it, "it's one of the best feelings". Enjoy your Ben. You both deserve it. And I understand what you mean about the vet bills. I'm ready to sell all my tangibles so I can fork it right over to the vets. But my Princess is well worth every penny. Take care of you and belly rubs to Ben. xo Luv ya, Jeanette

[Boxer_lover]

OK I am totally freaking out right now. I just noticed a patch of hair loss with a sore on Ben's back up by his neck. He has not had any symptoms of hair loss ever! I am so worried. I will be calling the vet as soon as they open in the morning! :(:(

Wendy

[AlisonandMia]

Does it seem to bother him at all? Does it feel hard when you touch it? You are definitely doing the right thing taking him to the vet.

How long has he been on trilostane now?

Alison

[Boxer_lover]

Alison,

No, he doesn't seem to notice it. No it doesn't feel hard. He has been on Trilo for 3 weeks.

Wendy

[Loladog]

Hi Wendy,

Is the area where Ben has the sore and hair loss oozing any puss? This sounds like the skin infections that Lola would get BEFORE she started her Lysodren treatment. She would first get a bump that looked like a hive. It would then ooze puss for a few days, dry out and then the hair would fall out leaving a bare spot. This stopped with her treatment so maybe it's just a random, unrelated thing with Ben such as a bug bite. I wouldn't expect the skin infection to arrive after he's doing well on his treatment.:confused: I look forward to hearing what your vet has to say.

Also, Happy Birthday to Ben!!!!:D I'm sorry I'm so late with my wishes.

[Boxer_lover]

Hi Aimee,

No the sore is not oozing any puss. My vet thinks it is just a random skin infection. She took a sample to test for ring worm (just in case since the sore is round). She has reccomended an topical medicine and just to watch it. If it gets worse she will put him on an oral medication. Sorry I cannot think what medication it would be...I am working a second job to pay for Ben's treatment and I am brain dead.....

Wendy

[ChristyA]

Dexter would get random staph infections. The vet gave us some medication and it would clear up. Let us know how it goes! You are doing a great job and so is Ben!
Christy

[Loladog]

When Lola's skin infections first started, they kept telling us it was ringworm and they'd prescribe topicals to treat fungal infections. It wasn't until she was diagnosed with Cushing's that they made the connection. Before we started treatment w/ Lysodren, she had to be treated with antibiotics for the skin infections. They were quite nasty so I'm happy to hear that Ben's spot isn't oozing anything.:D

[Boxer_lover]

I just wanted to give an update on Ben. He has been doing really well but this morning he refused his meds and has not wanted to eat. He looks and acts normal. Hopefully he just has a belly ache.:(

Wendy

[zoesmom]

Hi Wendy -

I think you ought to take him in right now . . . today . . . for another ACTH. Didn't go all the way back in your thread, but it looks like he's been on the reduced dose of 120 mg for a couple weeks now (after a couple weeks at 180 mg and then the pretty low stim results?) So while he's not having vomiting or diarrhea, that loss of appetite is definitely a big concern. You wouldn't want it to progress to him being sicker. Since his first stim test after starting trilo was so borderline, I wouldn't be surprised if he's now dropped tooo low. Do you have pred on hand, in case he takes a turn for the worse. Really, IMO, the sooner you get him in and stimmed, the better. And definitely, NO more trilo just yet. Keep us posted. Sue

[StarDeb55]

Wendy, I agree with Sue 100%. Loss of appetite is a huge warning sign when using either trilostane or lysodren. Please contact your vet ASAP.

Debbie

[Boxer_lover]

I called my vet and she is not overly concerned because Ben is acting normally otherwise. I did schedule another ACTH stim test for tomorrow....

He did finally eat a treat :)

[clydetheboosmom]

Hi -

My Bailey has gone Addisonian at least four times since on the Vetoryl...loss of appetite is definitely concerning. Please let us know how Ben is doing!

Lynne, Clyde & Bailey

[Boxer_lover]

Ben just starting eating :D I guess he was just trying to scare me!
Oh well ACTH tomorrow is a good thing anyway!

Wendy

[MiniSchnauzerMom]

Glad that Ben decided to eat - whew! That's a relief. Be sure to let us know the ACTH results when you get them. Will be watching for your update.

Louise

[Boxer_lover]

Just got Ben's ACTH results...looks like we are decreasing the dosage again!!!

Sample 1 <1.0 (1.0-5.0) ug/dL
Sample 2 2.9 (8.0-17.0) ug/dL

The Vet has recommended going down to 60mg. I wonder if I should buy some 30mg pills next time I order in case this is too much of a decrease? :confused::confused:

The Vet wants to test again in three weeks...:eek: I am just curious how much others are spending on their ACTH tests? It it costing me around $300 w/ the electrolyte test....seems outrageous!!:(

[labblab]

Hi Wendy,

Like you, I'd also be wondering whether halving Ben's dose to 60 mg. is going to be too much of a decrease. Actually, I'm kinda wondering why your vet is wanting to decrease at all, since Ben's "post" result has risen from 1.6 to 2.9 on the 120 mg. That 2.9 is right smack in the middle of the ideal therapeutic range. However, maybe she's concerned because his "pre" results keep coming back at less than 1.0. That result is lower than normal, and perhaps is the basis for her wanting to make the dosing change. But I'm with you -- I'd be thinking that 90 mg. may end up as the better dose. And so if it were me, I'd probably go ahead and order some 30 mg. capsules next time around in order to have that extra flexibility.

Aside from the one day when he was being picky with his food, is Ben otherwise still doing well?

Marianne

[zoesmom]

Wendy -

Yes, I think getting some 30's or even 15's would be a good move at this point. I see his ACTH actually went up a teeny bit since the last one. But it sounds like your vet would like to see him just a little higher. But if he's feeling ok, other than that loss of appetite last week, you probably don't want him to rise too much higher. Each dog seems to have a comfort zone range and Ben's may be in the mid 1.5 - 7.2 range (approx recommended range for trilo pups). My Zo seemed to feel and do best between 5 and 7, but that was her. Other dogs do fine slightly lower.

Just one question. So has Ben been off the trilo since last week, when he wouldn't eat? If so, how has he been doing? Appetite bounced right back? Good and happy overall, like you described recently? With no increase in cush symptoms, hopefully? That would be a good signal that he probably just needs that slightest bump in his cortisol.

And just to clarify - when you took him in for the ACTH last week, he hadn't had his trilo that very morning, right? Because of his inappetance the day before. If that's true, he probably would have had an even lower result. I think he's close to where his comfort zone is so maybe 60 mg is gonna be 'not quite enough'. It's half of his last dose. I suspect he will settle in some where around 75 or 90 mg (so you can see, the 15 mg might be the wiser choice - to combine with 60 mg.) That way you could try both 75 and 90, depending on how he does.

It might be premature - especially with his repeated low low baseline results of < 1.0. But your vet might be ok with doing just the post-number in the future. If not this next time, then when his numbers rise a little higher. That can save some $$. And Zoe never got the electrolyte test unless something seemed off. I know that's what they recommend. But once he's stable down the road, your vet might be more flexible with that too. Zoe's numbers were pretty resistant tho'. She ended up on very high doses - which changed occasionally but not much - and yet her numbers only fell below 5, just once. (And that time was way low - .7 and 1.6 - but she was definitely showing me the signs that something was wrong.) Most owners do get a good feel for their dog's symptoms as time goes and can read them like a book.

Hang in there, you're doing a fantastic job with Ben. Sue

PS - Don't know where you're getting your trilo, but you should check out www.pethealthpharmacy.com I checked around quite a bit, and found they had the best prices. You can e-mail them with what you need - strength and quantity - and they will quote you the price. On a first order, they like to have a hard copy of the written rx (i.e. send snail mail). Otherwise, they will have to call the vet's office to verify and that loses a few more days - at least it did for us. In fact once, someone at our vet's office read them the previous rx info over the phone and missed Zo's newer dose change so the pills that arrived weren't right. More days lost. It wasn't really pethealth's fault but they were very cooperative and sent me pills to make up the difference in the dosing error and I don't think they even charged me for those. So I always preferred to send in the hard copy of the rx. After they have that in hand, you can just submit a refill request online . . . until your current rx expires. Delivery usually only took 3 days - fromtime of online order till I received it.

[Boxer_lover]

No he only missed the one day of his trilo. I put him back on the next day since he was eating and seemed just fine. (I think he had a belly ache from popcorn..:p ) The rule at our house is that Ben gets pretty much anything he wants...I know that is bad!! :cool:

I agree with you guys, I think 60mg is going to be too much of a drop. Do you think I should keep giving him 120mg and order some 30mg now and then give him 90mg? I know this is not what the vet said to do...but she also is standing by the fact that the post ACTH should be between 8-17 even after I questioned her.

He is still doing great. I could see no difference in him after the last dosage change. I do not see any of the symptoms coming back. (although I am not home much with the extra job to pay for Ben's treatment!! :eek:) At this rate, I may be able to quit as his meds have more than been cut in half!! :)

Wendy

[zoesmom]

I know this is not what the vet said to do...but she also is standing by the fact that the post ACTH should be between 8-17 even after I questioned her.
Wendy

IMO, a slight dose reduction makes sense. However, that 8 - 17 is NOT the target range for a dog on trilo. The goal is a post # between 1.6-ish and 7.2-ish.

I would be concerned about keeping him on those 120's for too much longer. (But definitely hold on to them as, in time, he may wind up back on 120 or higher.) To me, a reasonable dose at this point would be, as I mentioned, 75 or 90 mg. So if you want the flexibility, then 60 mg caps with the 15 mgs would be logical. (That allows 60 . . . . or 60 + 15 . . . . or 60 + two 15's) Also, he may eventually end up on twice a day dosing. Usually, a good place to start with bid dosing is a dose slightly more than half of their once a day dosing. So 75 mg twice a day could be in Ben's future, too. (But that's usually only if their symptoms return later in the day.) So just trying to look to the future, if it were me, I'd order 60's and 15's for the time being. Hugs to Ben!!! Sue

[Boxer_lover]

I have 60mg pills right now. I started him on 3 a day, then two...hence the 120mg dose. I either have to do 60mg or stay with the 120mg until I can order some 30mg pills.

[zoesmom]

Well, since you already have the 60 mgs, then I guess if it were me, I'd go with the 60 mgs until the retest and then you can decide where to go from there :)Sue

PS - didn't check back in your thread, but if a dog has arthritis issues, letting their numbers ride slightly higher (like a post # closer to 6 or 7) can help with that. Does Ben have any problems in that area? 'Cause I suspect at 60 mg sid, his post number will creep up somewhat. If it does and he still has no return of symptoms, then that could work just fine for him. Those low pre #'s would also come up too, probably, and that might be what is concerning your vet.

[Boxer_lover]

He really doesn't have diagnosed artritis, but he has had some stiffness in the past. I guess I will go with the 60mg starting tomorrow. I hope his symptoms do not come back!

[labblab]

I agree with you guys, I think 60mg is going to be too much of a drop. Do you think I should keep giving him 120mg and order some 30mg now and then give him 90mg? I know this is not what the vet said to do...but she also is standing by the fact that the post ACTH should be between 8-17 even after I questioned her.

He is still doing great. I could see no difference in him after the last dosage change. I do not see any of the symptoms coming back.

Wendy, I know I feel really uncomfortable when I challenge my own vet, but I think you need to get to the bottom of your vet's expectations regarding Ben's treatment goals. A "post" value between 8-17 is not accepted Cushing's treatment protocol. At this point, I believe I would print out Dechra's "Treatment and Monitoring Flowchart (http://www.dechra-us.com/File/vetoryl_Treatment_and_Monitoring_Flowchart.pdf)," and physically take it in for an office visit with your vet. The recommended testing range is clearly marked on the Flowchart, and it is NOT 8-17 ug/dl. The ideal treatment goal is between 1.45 - 5.4 ug/dl.

Right now on the 120 mg. capsules, Ben's "post" result is squarely within that ideal treatment range, and he is seemingly happy and healthy with full resolution of his Cushing's symptoms. As we've already noted, it is true that his "pre" results have been lower than normal. So that may justify an incremental dosage decrease. But I'd hate to see Ben backslide unnecessarily (and for you to go through a lot more dosage tweaking and test expense) in conjunction with pursuing a mistaken treatment goal of 8-17 ug/dl.

I do not think you should alter your vet's dosing recommendations without first talking to her. But I do think you should clarify her reasoning for cutting him clear back to 60 mg. at this time. And I do think you need to find out why she is citing a treatment range that differs from Dechra's. If you have the printed guidelines in hand, hopefully you can just say to her, "Can you help explain this to me? I am confused about the treatment range that we are trying achieve for Ben..."

Marianne

[lulusmom]

Hi Wendy,

I just wanted to weigh in and validate everything Marianne has so succinctly explained to you. I had to run out the door this morning and didn't have time to post my concerns so I was very happy to see that Marianne addressed all of them and has made some excellent suggestions. I highly recommend that you heed her comments because she is spot on.

Glynda

[littleone1]

Hi Wendy,

I know that when Corky's first stim results came back the post was 2.1, which I felt was too low, as the reference range on the lab report also gave the range of 8.0-17.0 ug/dl. When I questioned the specialist about it, she and another member on the forum told me that the reference range is for healthy dogs and not for those being treated for Cushings. That's why your vet gave you that range. I hope this helps.

Terri

[Boxer_lover]

Well against my better judgement, I have lowered Ben's dosage to 60mg. This the third day. I haven't seen any return of the symptoms yet. He was panting a little last night, but I think he was just hot. I am keeping a close eye on him.

I plan to buy either some 30mg or 15mg pills on my next order just in case. His next ACTH test is in 3 weeks.

Have a good weekend and safe Memorial weekend. I am off to Florida next week. The pups will be in good hands with their Grandma :D.

[labblab]

Wendy, I would never want to keep harping in such a way as to make you think that you don't want to come back and report to us...:o :o :o

But I do feel compelled to offer out just one more suggestion, because I would HATE to see Ben revert back to being sick again. When he was worked up at Purdue, did you have any direct contact with the specialists there? Would you feel as though you could contact one of them, just to discuss the ACTH testing norms for a Cushpup under treatment? As Terri has written, that 8 - 17 ug/dl range that your regular vet is quoting is the norm for dogs who do not have the disease.

I only offer this out as a suggestion. So if you do not feel comfortable about it, you don't have to even comment on it. But I didn't earn my "Mother Hen" hat for nothing...;)

Marianne

[Boxer_lover]

Marianne,

Harp away! You are only do so because you care about Ben. I will contact my vet today...if I get a chance (VERY busy at work today). If not I will be sure to before I go on vacation. Thanks for your concern!

Wendy

[labblab]

Hi Wendy,

I've been thinking about you guys, and wondering how Ben is doing. Hope you had a great vacation, and that all is going well for you both!! When you have the chance, we'd love to get an update.

Hugs to you, and big pats to Ben :)
Marianne

[brandysmom]

Wendy,

I haven't seen any posts lately and have been wondering how you and Ben are doing. I hope all is well and please give us an update when you can.

[ChristyA]

Hey Wendy,
Just wondering about Ben. Hope all is well. Boxers are the best!:D
Christy

[Boxer_lover]

Hi all! Sorry for being gone so long! I have been working two jobs to cover Ben's expenses and I have had no time to do anything!!:(

Ben had an ACTH test done a couple weeks ago and here are the results:

Sample one 0.7 ug/dL
Sample two 0.7 ug/dL

The doctor was happy with these results and wants to continue him on 60mg per day of Trilostane.

As for Ben. He has been good. His hair is growing back a little from where he had his ultrasound so long ago. One thing I have noticed is that his skin has turned dark in a few spots...especially on his belly. I hope this is not a bad sign. The vet did not seem concerned.

Our household has been busy as my mom has been staying with me and she has a 12yr old Choc lab. So there are 4 BIG dogs in the house! The "kids" love having her around.

Just thought I would tell you all that I got a tatoo last week of my "kids"! They will be with me forever ;)

Wendy

[StarDeb55]

Wendy, it took me a bit to find Dechra's recommendations which I wanted to post for you as I was almost certain Ben's results are very, very low & to continue with the trilo may cause a problem. The following is a quote from the Dechra technical brochure.


A post-ACTH
stimulation test resulting in a cortisol
of <1.45 μg/dL (<40 nmol/L), with or
without electrolyte abnormalities, may
precede the development of clinical
signs of hypoadrenocorticism. Good
control is indicated by favorable clinical
signs as well as post-ACTH serum
cortisol of 1.45-9.1 μg/dL (40-250 nmol/L).


If the ACTH stimulation test is
<1.45 μg/dL (<40 nmol/L) and/or if
electrolyte imbalances characteristic
of hypoadrenocorticism (hyperkalemia
and hyponatremia) are found, VETORYL
Capsules should be temporarily
discontinued until recurrence
of clinical signs consistent with
hyperadrenocorticism and test results
return to normal (1.45-9.1 μg/dL or 40-
250 nmol/L). VETORYL Capsules may
then be re-introduced at a lower dose.

Since I don't use trilo, I'm not comfortable commenting much further. The only thing I will ask is were Ben's electrolytes checked when the stim was done? I'm going to PM Marianne to make sure she sees this.

Debbie

[Boxer_lover]

Yes his electrolytes were normal.

[Spiceysmum]

Hi,

Those numbers are very low. When Spicey went down to 0.9 we were told to stop treatment for a week then restart a week later on a lower dose. Her symptoms never came back so we decided to wait until they did before resuming. This took 18 months and we have just started her back on Trilo. That is unusual though and most dogs have to start back on it way before then. She was very well at the time of being low and we never would have known if it wasn't for the ACTH test.

Linda and Spicey

[labblab]

Ben had an ACTH test done a couple weeks ago and here are the results:

Sample one 0.7 ug/dL
Sample two 0.7 ug/dL

The doctor was happy with these results and wants to continue him on 60mg per day of Trilostane.

Wendy
Hi Wendy,

Thanks so much for coming back and checking in with us! However, you've got me grabbing for my "Mother Hen" hat again, because I'm also worried about those ACTH results. Are you SURE that the second sample was only 0.7 ug/dl? Because the quote that Debbie gave you above is exactly right -- Dechra considers a result less than 1.45 ug/dl as being TOO low and the precursor for trouble :(. Ideally, they are looking for a test result between 1.45 and 5.4 ug/dl (or up to 9.1 as long as symptoms are well controlled).

I'm doubly surprised that your vet is OK with this, since the last time you checked in we were worried cuz he was wanting Ben's result to be way up in the 8 - 17 ug/dl range...:confused:

It would be great if you'll double-check those test results and get back to us, OK?

Marianne

[Boxer_lover]

Yes, that is correct. I have the printout from the lab.

[labblab]

Oh phooey!!!!!! :( :( :( :(

I was really hoping there was some mistake. Wendy, I don't know what else to tell you other than that according to Dechra and all the resources of which I'm aware -- those numbers are too low. I am really surprised that Ben is acting normally with that low a cortisol level, especially with extra excitement in the house right now.

Have you ever had the chance to clarify your vet's expectations re: Ben's test results? I know we talked about that back when your vet was wanting his result to be in the 8-17 range. Before Ben gets into trouble, maybe this would be the time to print out the published Dechra guidelines and ask to go over them with the vet (and especially ask why he's OK with a result of 0.7 when Dechra specifically states that is TOO LOW...:o).

Here's a link to Dechra's U.S. Product Insert for you to refer to:

http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

Marianne

[Loladog]

Hi Wendy,

It's great to see you back on here! I'm sorry that you've been so busy with your two jobs.:( I don't have any experience with Trilostane as Lola was treated with Lysodren but I agree with everyone that Ben's results of 0.7 seem way too low. I've always been told that the ideal range is somewhere between 1 and 5. At one point, Lola's levels went down to 1.0 pre and 1.2 post and she was very ill (diarrhea, lethargy and loss of appetite). It's really amazing that Ben seems to be feeling alright. If I were you, I would follow up to verify that Ben's results are not something to worry about. I've also been told that the post # should be about double of the pre. If the #'s are exactly the same as in Ben's case, that should be a red flag that he's not able to produce any of his own Cortisol with Stimulation and he could possibly be in Addison's.

I am fairly new to all of this so others, please correct me if I'm wrong. However, the above is what I was told when we accidentally put Lola into Addison's.

[StarDeb55]

Aimee, you a pretty much correct, although the post #'s for trilo can run a tad bit higher as long as the pup remains clinically well. What you mention concerning pre & post numbers being basically the same is called a non-stimulatory response. With trilo, this is not as huge a concern as with lysodren, as long as the numbers are >1.45. Obviously, this is not Ben's situation.

Debbie

[Boxer_lover]

I have a call into the vet this morning. I did not give Ben his meds this morning because he had an upset stomach. This is the first sign of anything bad going on with him. I will update after I tald to the dr.

[labblab]

That sounds like a good plan, Wendy. We'll be anxious to know how things turn out.

Please give Ben some big hugs for me,
Marianne

[Squirt's Mom]

Hi Wendy,

Anxiously awaiting word on Ben this morning.

You done GOOD, girl, to withhold his meds! :D Way to go, Mom!

Hugs,
Leslie and the girls - always

[Boxer_lover]

Ok I just heard back from the vet. I know you are all going to harp...but here is what she said...

She acknowlegded that the level of .7 is a little low but based on his clincal symptoms, she is standing by the dosage.

BTW, he belly ache this morning was a fluke. He was all better this later this morning.

Wendy

[Boxer_lover]

Oh I forgot, she said his electrolytes were actually better than good! So that was another basis for her recommendation on dosage.

[labblab]

Wendy, all I can tell you is to continue to watch Ben very closely (which I know you are already doing), and withhold his trilostane at the least indication of any problems at all...:o

And once again, if you should ever want to talk directly with one of the vets who answers technical questions on behalf of Dechra U.S.A., here's the contact info. They will speak directly with pet owners re: general questions concerning dosing and monitoring guidelines.

http://www.dechra-us.com/Default.aspx?ID=365

Marianne

[mypuppy]

Hi Wendy,
I had the same situation as Linda's Spicey with my Princess. IMS started her on 120mg. And her cortisol dropped too low, but never showed any signs of it. IMS suggested stopping for a week and restart at the lower dose, but I held off for 5 months until symptoms reappeared. She is now back on 60mg and symptoms have resolved. I do so hope all will go well with Ben. lots of good wishes. luv bunches. Xo Jeanette

[Boxer_lover]

Wendy, all I can tell you is to continue to watch Ben very closely (which I know you are already doing), and withhold his trilostane at the least indication of any problems at all...:o

And once again, if you should ever want to talk directly with one of the vets who answers technical questions on behalf of Dechra U.S.A., here's the contact info. They will speak directly with pet owners re: general questions concerning dosing and monitoring guidelines.

http://www.dechra-us.com/Default.aspx?ID=365

Marianne

I always keep a very close eye on him.;) I feel kind of stuck. I worry about his levels being low, but the vet is correct in the fact that his symptoms are better and he is showing no signs of going addison's. (I was sure to ask her what I should be looking for if he was).

Part of me want to take him off the meds for a few days and see how he does. The other part of me does not want to "mess" with his treatment and go against the vet's recommendations. :confused:

Being a mom is hard! :eek:

[labblab]

Oh Wendy, being a mom most certainly is hard!!! But you are doing a wonderful job. :)

And no, unless you should find yourself in an emergency situation, I do not think that you should go against your vet's recommendations without having first discussed it with her. We are only qualified to give you our thoughts and to share our experiences. But this way, you WILL be prepared to discuss issues if they should arise. And I hope that's a good thing.

If there's anything we've learned here, it's that every pup reads the Cushing's "book" differently. So what suits one dog may not agree at all with another. Please do keep us updated, though, or else we'll worry about you guys!

Marianne

[Boxer_lover]

Marianne, you are probably right. I will be keeping an extra eye on him!

[Boxer_lover]

Just uploaded a new picture of Ben taken today!

[Boxer_lover]

I have also added a pic of the new tatoo of my babies!

[lulusmom]

Just checked out both pictures and I love them both. Ben is adorable and so photogenic. Your tat is great and you're right, your tat artist did a great job.

[labblab]

Wendy, I totally agree with Glynda!! :) :)

I love your photos, and your tatoo is awesome!

Please give all your kids a big hug for me, OK?
Marianne

[brandysmom]

Hi Wendy,

I'm glad to hear Ben is doing well. I can understand the time thing as I also work 2 jobs. It gets crazy at times and it's impossible to have a moment to do anything. I love the tatoo and I love the pictures!

[Boxer_lover]

Ben had a belly ache again this morning...so no meds. That is twice in not so many days. I am a little concerned. I don't think he got into anything as he does not spend much time outside.

Poor guy, I could hear his tummy rumbling as I was leaving for work. I so worry about him. He came in an laid down on the bathroom floor when I was in the shower this morning. It hurt my heart to leave him this morning. :(

[Boxer_lover]

First off, I want to say that Ben has been doing well except for some panting spells (but it has been crazy hot here in the midwest). But, I have scheduled an appointment with the vet for him tomorrow due some abnormalities on the pads of his paws. It is almost like he has a flat tire (I know that is not a good explaination). I have noticed it in the past but have not done anything about it due to all the other Cushing's related stresses.

Just wondered if anyone out there with big dogs has ever had this happen. It is almost like his pads have growths on them on the sides of his feet. It doesn't seem to be bothering him...but we all know that if he loses his mobility that would be the end :(

Thanks as always for you support!

Wendy

[Boxer_lover]

Just got back from the vet and Ben has idiopathic footpad hyperkeratosis. She was able to trim some of the growths and reassures me that it isn't a problem unless it starts to bother him....

[ChristyA]

OMG! Dexter had that on his nose,,,the groomer trimmed it also. Isn't that something, I wonder if it is common in Boxers? His never seemed to bother him either.
Christy

[Boxer_lover]

OMG! Dexter had that on his nose,,,the groomer trimmed it also. Isn't that something, I wonder if it is common in Boxers? His never seemed to bother him either.
Christy

OMG, Ben has had raised "bumps" on his nose as well. We use vasolene on it and it helps some....:eek:

[ChristyA]

Our groomer had a Boxer and her boy had the same thing on his nose. We used to take Dexter and Sophie to her to bathe and have their nails trimmed. She did Dexter's anal glands too :o.

[Boxer_lover]

Hi Friends,

Just thought I would touch base and let you know that Ben is doing great. He is still on 60mg of Trilo a day.

Ben has not had a ACTH test lately because he seems to be doing so well. He has been very alert, loving and seems to be playing a lot more. Even today he was playing tuggie with my youngest boxer, Olivia. My mom was babysitting and had to text me with the news!! Mom was almost crying she was so happy.

Anyway, I will be sure to update you all when we do more testing. Right now all is well!

Belly rubs to all your furbabies!

Wendy

[Squirt's Mom]

Hi Wendy,

So glad to hear that Ben is feeling so well! I know you are tickled pink! :)

Keep up the good work and let us hear from you again soon!
Hugs,
Leslie and the girls :D - always

[mypuppy]

:):):):)




QUOTE=Boxer_lover;39188]Hi Friends,

Just thought I would touch base and let you know that Ben is doing great. He is still on 60mg of Trilo a day.

Ben has not had a ACTH test lately because he seems to be doing so well. He has been very alert, loving and seems to be playing a lot more. Even today he was playing tuggie with my youngest boxer, Olivia. My mom was babysitting and had to text me with the news!! Mom was almost crying she was so happy.

Anyway, I will be sure to update you all when we do more testing. Right now all is well!

Belly rubs to all your furbabies!

Wendy[/QUOTE]

[ChristyA]

Way to go BEN!!!